'New Thinking on Living with Dying': Research Network

为了回答“我们能否改善患有限制生命疾病的人的福祉”这个问题，我们建议建立一个由研究人员和临床从业人员组成的网络，并举办三次研讨会、三次公共活动和一次患者论坛。临床护理的巨大进步延长了生命限制和不可治愈疾病的预期寿命。由于预期寿命的延长，预后不良可能意味着与死亡共存数年。患有限制生命的疾病的患者报告生活质量低，焦虑或抑郁程度高。这就提出了两个重要的挑战：如何提高这群患者的主观幸福感？我们能不能发展出一种适当的有组织的临床反应来应对通常存在的担忧。工作坊：思考死亡？（20名参与者）本次研讨会的问题是：“我们能活到‘死’吗？”跨种族、跨文化和跨宗教的视角是否提供了构建生与死的新方法？在限制生命的疾病期间谈论幸福有意义吗？“我的死亡”有多私人？Adriana Cavarero受邀公开演讲（120名观众）研讨会：心理健康和与死亡共存（2天活动：20名参与者参加研讨会/开放注册（30英镑支付费用））本次会议的问题是：“我们如何在限制生命的疾病期间绘制健康地图？”问题包括:1。在这个时候，“我是谁”的感觉是如何不稳定的？悔恨、失落、内疚、羞耻和恐惧与限制生命的疾病之间有什么关系？我们如何在这个时候适应新的身份，身体形状和身体能力？Arthur Frank受邀做公开讲座（120名观众）工作坊：临床护理模式（20名参与者）这方面的问题将是“目前的临床模式是否充分满足了濒死患者的需求？”研讨会的问题包括：1。我们是否对这组患者的需求有正确的理解和认识？治疗在护理中的作用是什么？我们如何调整沟通实践，使其更合适？下面的公共活动旨在让患者参与新材料和“软”方法的开发。思考的食粮：阅读作为治疗本次会议将由国家认可的“读者组织”组织。这将包括试用一系列合适的阅读材料。100名参与者。DaDa节：改变的身体根据批判性残疾理论，DaDa节的这一环节将探讨身份在这一时期的变化，并探讨我们如何学会适应不断变化的体型和能力。预计客流量120 （Bluecoat的容量）和网络流媒体内容。刺激环节：与自然接触已经有实证研究表明，在创伤时期与自然接触的重要性；尤其是在面对死亡的时候。与尼斯花园和塞夫顿分配运动合作，我们将研究如何将现有的实证研究——与自然的接触显著提高幸福感——转化为实践。这些病人已经改变了能力，经常会感到疲倦，无法独自负责分配或花园。通过共享分配，患者可以获得与自然相遇的好处，而不会感到它是一种负担。30人参加研讨会，然后将建立病人轮班表。患者论坛反馈前几次会议的结果，并测试前几次会议期间开发的患者材料的有用性。到项目结束时，我们希望将整理好的个人故事纳入网站并作为出版物“癌症故事”；撰写了两篇期刊文章和患者资料，以及关于自然在不可治愈疾病中的作用的政策

To answer the question 'can we improve the well-being of people with life-limiting illness' we propose to establish a network of researchers and clinical practitioners and to hold three workshops, three public events and one Patients' Forum. Radid advances in clinical care have extended life expectancy in life limiting and non-curative illness. As a result of the extension of life expectancy, poor prognosis can mean living with dying for a number of years. Patients with life-limiting illness report a low quality of life and high levels of anxiety or depression. This raises two significant challenges: How can subjective well-being be enhanced for this cohort of patients? Can we develop an appropriate structured clinical response to what are often existential worries. Workshop: Thinking about Dying? (20 participants)The question for this workshop is: 'can we live 'right up to death'?'1. Do cross-ethnic, cultural and religious perspectives provide new ways to frame living with dying?2. Does it make sense to talk about well-being during life-limiting illness?3. How personal is 'my death'?Adriana Cavarero invited to give public lecture (120 audience)Workshop: Mental Health and Living with Dying ( 2 day event: 20 participants in workshop / open registration (£30 to cover cost))The problem for this conference is: 'how can we map well-being during life-limiting illness?'. Questions include:1. How is the sense of 'who I am' unsettled at this time?2. What is the relationship between remorse, loss, guilt, shame, and fear to life-limiting illness?3. How can we can accommodate new identities, bodily shapes and somatic capacities at this time?Arthur Frank invited to give public lecture (120 audience)Workshop: The Clinical Model of Care (20 participants)The problem for this will be 'does the current clinical model adequately address the needs of patients living with dying?'. Questions for the workshop include:1. Do we have the right level of understanding and knowledge of the needs of this cohort of patients?2. What is the role of therapy in care?3. How might we adapt communication practices to make them more appropriate?The following public events aim to involve patients in the development of new material and 'softer' approaches.Food for Thought:Reading as TherapyThis session will be organised by the nationally recognised 'Reader Organisation'. It will involve piloting a range of suitable reading material. 100 participants. DaDa Festival: Changing BodiesDrawing on critical disability theory, this session at the DaDa festival will deal with how identities changes during this period and ask how we might learn to live with changing body shapes and capabilities. Expected footfall 120 (capacity of the Bluecoat) and web streaming of content. Stimulus session: Encounters with NatureThere is already empirical research to show the importance of encounters with nature during times of trauma; in particular when living with dying. Working with Ness Gardens and the Sefton Allotment Movement we will investiage how to translate existing empirical research - that encounters with nature significantly enhance well-being - into practice. These patients have altered capacities, can often be tired and unable to have sole responsibility for an allotment or garden. By sharing allotments, patients can achieve the benefit of encounters with nature without feeling it a burden. 30 people involved in the workshop then a rota of patients will be established.Patients ForumTo feedback results from previous sessions and to test the usefulness of patient material developed during the previous sessions.By the end of the project we expect to have collated personal stories to be included on the website and as a publication 'Cancer Stories'; to have produced two journal articles and patient material as well as policy on the role of nature in non-curable